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How to Handle Worry During 'Watchful Waiting'

If you’ve been diagnosed with cancer, it's likely that at some point in the process, your oncologist will recommend a period of “watchful waiting." Depending on your diagnosis and time in active treatment (chemo, radiation or surgery), watchful waiting can be psychologically challenging.

You may worry that cancer will grow and spread while you wait; you may feel anxiety that they are not “doing anything” to fight cancer while you're waiting; or you may feel stuck, unable to get back into your regular life until you know the results of the scans or tests that will happen at the end of watchful waiting (yes, the oncologist should give you a timeline for how long watchful waiting lasts). Hearing about other people’s experiences can help you form a coping strategy that works for you; here are a few stories that may give you some useful insights.

Beth was diagnosed with a stage I breast cancer in her left breast, which was treated with surgery and radiation. During her breast cancer work up, a mammogram revealed a potentially concerning spot on the right breast; to her surprise, instead of suggesting immediate active treatment of the right breast, her oncologist recommended watchful waiting for 3 months and a repeat mammogram. Beth voiced her concern to her oncologist, “in 3 months that spot could be cancer and start spreading all over the breast!” Beth’s oncologist explained that since the spot had been stable on previous mammograms, it was very unlikely to be an active cancer site and reassured her that there were several things she could do to fight cancer over the next three months.

The cancer fighting plan during watchful waiting for Beth included an anti-inflammatory diet and a safe movement program. She replaced red meat and sodas with beans, veggies, and bubbly water and joined a dance group for exercise three days a week. Losing weight and getting active not only improved Beth’s body image, but also diminished her worry about cancer growing or spreading, “I am doing everything I can to stay healthy, and that feels good!”

Steve was diagnosed with prostate cancer last year, treated with surgery and hormone therapy. When his PSA (prostate specific antigen) went up 2 points, his oncologist did not recommend immediate radiation therapy as Steve imagined, but rather watchful waiting. Steve was not just worried, he was scared that if he waited on radiation the next PSA would be even higher. “So now I just sit at home and watch Netflix until the next PSA?! My whole life feels like it is on hold till the next PSA is checked!” This type of thinking is common for people with cancer: they feel that their life needs to be on hold while they get treated, or until they know exactly what the next treatment plan will be. Unfortunately, this mind set of waiting till “cancer is over” means people miss out on a lot of what makes life worthwhile.

For instance, over the next month Steve’s family was going to the beach, his grandson was playing in a baseball tournament, and his coworker had nominated him to go to a special conference. To manage his fear about the next PSA, Steve had to actively work on practicing helpful thinking, for instance, “my oncologist is an expert, he wants to beat cancer as badly as I do,” “I do have a plan, the PSA will be followed up on,” “the whole reason I have gone through treatment is so that I can participate in cool family and work events,” and “I have gotten through follow up labs before, I can do it again now.” Steve not only practiced saying these helpful thoughts but also wrote them down in a journal each day. The act of writing down the thoughts is key to helping the brain hold on to them, and allowing the brain to access them quickly when cancer reminders come up in everyday life, as they so often do (commercials on TV, ads on the internet, bills in the mail).

Karen was three days from finishing chemo and radiation therapy for a brain tumor when she realized that her worry about cancer was getting worse. Treatment had been difficult: Five weeks of daily trips into the cancer center, a mask that held her head down while the beam of radiation targeted her tumor, and nausea that kept her from enjoying food for four days after chemo. “I know I should be glad it is almost over, but I am going to miss the people at radiation, they have been so encouraging, and then after chemo is done, what is my job, who am I? Am I the brain tumor patient, or am I supposed to be the person I was before cancer?” Karen had been in nursing school when she was diagnosed with cancer, and was now having to think about next steps in life once the active part of cancer treatment was done.

For Karen, managing the worry of watchful waiting till the next brain MRI required attention to how she saw herself, specifically not as a “cancer patient” but as a “survivor,” and also a daughter, friend, girlfriend, student and lover of gardening and Marvel Movies. Cancer can be an all-consuming process, and if you don’t pay attention to thinking about yourself as a complex, multifaceted person, then cancer worry can take over. For Karen a gradual return to nursing school was key. Trying to take all her classes at one time was too taxing on her energy and concentration, so a part time return meant that she could keep working towards her goal of being a nurse, but also have time for self-care (exercise, nutrition, stress management) that would keep her energy up as a cancer survivor.

The watchful waiting period often comes with some worry, but with attention to thinking patterns, and self-care, watchful waiting could be a time that you really focus on meaningful life activities outside of being a cancer patient.

Wendy Baer, MD, is the medical director of psychiatric oncology at the Winship Cancer Institute of Emory University in Atlanta. Dr. Baer helps patients and their families deal with the stress of receiving a cancer diagnosis and going through treatment. Her expertise in treating clinical depression and anxiety helps people manage emotions, behaviors and relationships during difficult times.

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